The day you find out you have multiple myeloma is obvi­ous­ly one of the hardest days in your life.

It is a very personal experience, but I’m sure you can remember your feel­ings of shock, fear, disbelief, or anger when you were told that you have multiple my­e­lo­ma. Some of you may have felt relief that you have put a face on the mystery.

What follows that day can have a profound im­pact on the rest of our lives. I want to share my experi­ence with the newly diag­nosed patients read­ing The Beacon so that they might be able to better under­stand what they are going through.

Because of the difficulty of diagnosing multiple myeloma, the stage at which it is discovered varies greatly from person to person. Many are diagnosed with advanced disease that manifests itself through broken bones, organ failure, or extreme pain. The “lucky” ones (I consider myself one of them) catch their disease at an earlier stage; sometimes they don’t even have any symptoms at all.

I was diagnosed only after a two-year search for the cause of my recurring abdominal pain and intestinal problems. After I got the results from a bone marrow biopsy indicating that I had multiple myeloma, the doctor spouted forth an overwhelming amount of information on how I could or should treat my disease. I found myself in such a state of shock that all I heard was the teacher in a Charlie Brown cartoon talking – wah, wah wah wah, wah wah. INCURABLE CANCER, wah, wah wah wah.

Because I was asymptomatic, I didn’t need to begin treatment right away. That turned out to be a huge blessing – a blessing that I wasn’t even aware of at the time.

The weeks, or even months, following my diagnosis, I struggled mightily to come to grips with the im­pli­ca­tions of my diagnosis.

How will I be able to raise my children?
How long am I going to live?
How disabled am I going to get and when?
Should I move to a place that specializes in this care? If so, when?
How will I pay for all this?
And on and on and on.

The result of this struggle was a predictable huge load of stress. I am sure most of you can relate.

In addition, I was in a state of constant hyper-awareness of how I was feeling. Every ache, pain, and itch was examined and questioned in depth.

Why do I cough?
Should I be having this diarrhea?
What is that ache in my elbow?
How come I have a headache?

I can state without a doubt that stress has a very negative impact on my health. During times of high stress, my body definitely takes a hit. So for the first two or three months after my diagnosis, I felt pretty crappy.

I hadn’t started treatment yet (more on that later), and my cancer was still asymptomatic, so why was I feel­ing bad?

What I have found in hindsight is that the cause of my current illness wasn’t my cancer – it was the stress of my diagnosis.

Don’t underestimate this stress. Being told you have an incurable disease is enough to blow anybody’s gaskets. I realize, of course, that many patients with pain, broken bones, or worse, also have the physical stress of their body trying to heal.

Since my diagnosis over two years ago, I have gone through nine months of induction therapy, three bone marrow biopsies, 232 million blood tests, a stem cell harvest (for future transplantation), and I have been on maintenance therapy for three months now.

These experiences have allowed me to distinguish the different symptoms of the cancer from those related to treatment and from those due to stress.

All three cause negative feelings in my body, but it helps me mentally to be able to distinguish them. It helps me, for example, to feel that my treatment is keeping my cancer from progressing and that therefore pumping this poison into my body has a purpose.

Many patients don’t get the luxury to sort these feelings out. All too frequently, I hear of patients who have had to start their treatment immediately upon diagnosis. I can only imagine how hard it must be to try and sort out what is disease, what is treatment, and what is stress.

For those of you who are recently diagnosed, I urge patience. I know this is a VERY difficult time in your life. However, I can tell you that it gets better.

If you are asymptomatic, or maybe if you only have MGUS, try to see this diagnosis as the positive that it is. You don’t have to add any treatment to your diet for now - or maybe even ever.

If you are symptomatic or need to begin treatment right away, try to see the positive in the fact that you have identified your disease and that the treatment you are getting will soon make you feel better and prolong your days to a meaningful degree.

In either case, hug your loved ones, smell the roses, enjoy the richness of life around you. Facing your own mortality is a heavy experience, but we are all equipped with the tools to do so because we all have to do so eventually.

However, remember that just getting a myeloma diagnosis may cause you to feel physically ill for a while.

Be patient in your search to understand all of this. In time you too will be able to identify most of what you are feeling. The pain of diagnosis will subside with time. Unless you are truly facing a medical emergency, try not to turn your condition into one. It won’t help; it will only increase your stress level.

I found a lot of comfort right here in these pages. Reading about the experiences of real people who have ac­tually been through this and how they are coping with their disease was very helpful to me.

In time you will discover what works for you, but for the first few days / weeks / months, just give yourself per­mission to be sick.

I would love to hear from others in our community who had to deal with symptoms and/or treatment at the same time as their diagnosis. How did you figure out which was doing what to you? How did you get through these dark days?

Trust me; our recently diagnosed friends want to know.

Aloha and carpe diem!